Jeanne Lenzer reports on a growing movement aiming to overcome the medical and social barriers to appropriate care

The fourth Lown Institute conference held in Chicago, Illinois, in April brought nearly 300 doctors, patients, policy makers, and activists together to discuss barriers to “right care.” The focus was on how to tackle the problems of bad science, undertreatment, and overtreatment—and how to build a movement for change, which several speakers likened to the civil rights movement.

A recurrent theme among speakers and participants was that fee-for-service medicine and profit driven testing and interventions are major obstacles to right care. Speakers emphasized that this could be achieved only if we simultaneously address issues such as the wealth gap, social disparities, and corporate control of politics.

Shannon Brownlee, senior vice president of the Lown Institute, told The BMJ that the presence of a wide range of activists and organizations at the conference gives her hope that a genuine new social justice movement is emerging.

More money for less: the harms of finding things

Rita Redberg, editor of JAMA Internal Medicine, said, “We spend $3tr, far more than other countries, yet we still have millions and millions of people without access to healthcare.” She added, “The Institute of Medicine estimated that $1tr a year is spent on waste or overuse.” Both physicians and patients imagine that if some care is good, more must be better, and that a test can’t hurt.

Insurance coverage of unnecessary tests, said Redberg, contributes to overtesting and overtreatment: “The United States Preventive Services Task Force gave a grade D recommendation to PSA [prostate specific antigen] testing but Medicare still covers it, so it means a lot of men are still getting a test that is costing not just money, but lives.”

From the audience, Jill Wruble related her own experience with the unintended consequences of medical testing. A radiologist at the West Haven Connecticut Veterans Administration Medical Center and clinical assistant professor at the Yale School of Medicine. Wruble noted that tests may not only cause physical harms but have adverse medical, social, and financial consequences.

Wruble said she learnt the hard way. At a previous job, she idly gave herself a DEXA (dual energy x ray absorptiometry) scan when a patient cancelled an appointment. Despite decades of athletics, Wruble said that the scan, quite improbably, showed “borderline osteopenia at L1.” She casually mentioned this to a primary care physician at an annual physical exam. The physician noted it in Wruble’s medical record, which was later requested by an insurer when she sought to update her disability insurance. The insurer flatly denied her policy renewal. “I had to see an endocrinologist and take calcium,” and a year later was offered a higher cost, inferior, short term policy with a rider.

To gales of laughter from the audience, Wruble remarked that she deliberately has not had a physical exam in the 15 years since.

We need a culture change

Joanne Lynn, director of Altarum Institute’s Center for Elder Care and Advanced Illness, in Washington, DC, said that simply having good information isn’t enough: emotions, habits, and money “get in the way” of right care.

Lynn cited the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT),1 which found that slightly less than half (46%) of doctors knew when their patients preferred to avoid cardiopulmonary resuscitation at the end of life; nearly half of patients didn’t have do-not-resuscitate orders written until two days before they died, and half of conscious patients who died in the hospital were reported by family members to have moderate to severe pain at least half the time. Unfortunately, interventions aimed at “enhanced patient-physician communication” with greatly improved information and nurses providing counsel failed to improve outcomes.

Lynn said deep seated emotions and habits interfere with change and that we have to change the default pattern of how we manage end-of-life care. She told the story of one of her patients, a woman with dementia who died in her 90s in a nursing home. She said, autopsies were routinely offered in her practice and the patient’s autopsy revealed a bleeding gastric carcinoma. The woman had two daughters, both in their 70s. One of the daughters reacted angrily, saying, “How could you have missed this?” She was furious that her mother died with an untreated cancer. But the other daughter calmed her sister, saying “She couldn’t have had a better life or a better dying—treatment would only have made her life miserable.”

Lynn told The BMJ, “We have to change the default pattern” of care. Very old people with substantial disability “are often much more concerned about housing and food, and less about long shot interventions.” She said, “In Detroit, there is a one year wait for Meals on Wheels [a food program for people confined to their homes]. If there was a one year wait for mitral valve surgery, we’d be up in arms. We have to learn to advocate for the things that matter most.”

But many patients request treatments or tests only because doctors and industry cultivate those demands. Kim Witczak told the story of her husband, who developed akathisia and committed suicide after his physician prescribed sertraline to treat his insomnia. Unfortunately, his doctor failed to recognize the akathisia as a side effect of the drug and told him to keep taking it.

Witczak said the recent United States Preventive Services Task Force recommendation that all adults should be screened for depression is an example of how doctors encourage faith in antidepressants. She said that the most widely used screening tool for depression, PHQ-9, was created by Pfizer. She asked, “What if you’re going through a divorce, or you can’t pay the mortgage?” The test won’t distinguish that, of course, and hurried doctors generally respond with a prescription. She said, “I truly believe the public needs to push back. Maybe what we’ve been told isn’t the answer. Another shooting in the schools and we’re told we need more screenings, more mental treatment, more, more, more. But maybe we need less.”

“Moral distress,” social disparities, and living on a park bench

Nneka Sederstrom, director of ethics at Children's Hospitals and Clinics of Minnesota in Minneapolis, said the stress of a bad healthcare system is not just hurting patients. Many doctors, she said, have “moral distress” about situations they feel helpless to change. She told the story of a resident doctor who was deeply disturbed that she was forced to resuscitate a 90 year old in the middle of the night because the attending doctor “had horrible practices” around end-of-life care.

Echoing Lynn’s comments, Lauren Taylor, a PhD student at Harvard Business School and coauthor of The Healthcare Paradox, said the social needs of the US public are being ignored while money is lavished on medical technology. “The US spent ninety cents [on social services] for every dollar spent on healthcare.” But, she said, other wealthy nations belonging to the OECD [Organisation for Economic Cooperation and Development] flip that ratio, spending $2 on social welfare, such as job training, housing, and nutritional care, for every dollar spent on medical care, and those nations have longer life expectancies and lower infant mortality than the US.2 The problem of social disparity was front and center in a presentation by Jeff Brenner, a family physician and executive director of the Camden Coalition of Healthcare Providers, in Camden, New Jersey. Brenner opened his solo practice in 2000, in a poor Puerto Rican and Dominican community beset by violence. He said, “Primary care is utterly failing. We run from room to room to room in meaningless increments of meaningless 15 minute visits.”

Brenner concluded that his patients, who were “swept in and out of a vortex of chaos,” were experiencing chronic stress that would lop up to 20 years off their lives. “Right care” under these circumstances, he said, means changing these conditions: “If you have an 82 year old living on a park bench, nothing you do [medically] will make a difference.”

After identifying how fragmented care led to disproportionate costs for patients with high needs, his work caught the attention of writer and surgeon Atul Gawande, who profiled Brenner in the 2011 New Yorker article “The hot spotters.”3 Brenner and his group raised money to put people with highly complex medical problems into new apartments with various supports. Not only did their health improve but costs went down.

Bad science

John Ioannidis, professor of medicine and health research and policy at Stanford University School of Medicine, told the audience that even meta-analyses performed by “the best meta-analysts in the world” still end up with “absolutely no agreement.” One drug, he said, “is the best in one ranking and the worst in another.” He said, “There are so many steps in a meta-analysis and so many decisions to be made” that it isn’t surprising to find conflicting results.

Even Cochrane systematic reviews came under scrutiny: in a study he conducted with Fleming et al, of all 1394 systematic reviews published from January 2013 to June 2014, only 608 had GRADE [Grades of Recommendation, Assessment, Development, and Evaluation] assessments, and overall only 25 studies (4.1%) had a high quality of evidence reported that allied both to significant results and a favorable interpretation of the intervention by the reviewers.4

Ioannidis said that while “a lot of people believe we can do more with observational data,” even with adjusting for different variables, any result is possible. “Salami sliced, data dredged papers are becoming more frequent and public policy is derived from spurious studies.”

He said evidence based medicine should be about integrating individual clinical expertise with the best external evidence available. Instead, he said, “It’s mostly becoming finance based medicine to capture the largest possible market share.”

Money, money, money

If one theme was repeated throughout virtually all of the presentations and workshops, it was how profiteering is interfering with good science and right care. Ioannidis described a study he was involved in that found meta-analyses conducted by industry authors were 22 times less likely to publish any negative caveats about antidepressants than independent researchers.5 Adriane Fugh-Berman, associate professor in the department of family medicine at Georgetown University Medical Center, told the audience that profiteering is behind the lowered thresholds for disease diagnosis and the outright manufacture of new “diseases.” She said industry likes to use key opinion leaders to promote drugs because while it’s illegal for companies to promote their products for unapproved indications, it’s not illegal for opinion leaders to do so.

Roy Poses, president of the Foundation for Integrity and Responsibility in Medicine, based in Warren, Rhode Island, cited work by Transparency International that found 43% of respondents believe US healthcare is corrupt and 64% believe the government is controlled by a few big interests.6

Time for a movement

Casey Quinlan, a journalist and self described “patient level policy wonk,” with Mighty Casey Media, told the audience in a fiery speech that she watched on as her grandmother was treated by an “avuncular doctor” who prescribed her 50 different medicines. The family fired the doctor, and her grandmother went on to live many more years. Her parents too suffered at the hands of doctors, and when Quinlan herself had cancer diagnosed in 2007, she says she “took all my parents had taught me, and put it to work… I wrote a book about managing medical care. I became a global voice for patient empowerment, open science, and participatory medicine.” The central problem, Quinlan told The BMJ, is that healthcare is a $3tr industry, “Who wants to give up any of that? All of us, whether it’s clinicians or patients or administrators, have either acquiesced or actively worked to build this system and now we all have to work together to change it.”

Quinlan’s call to action was joined by other activists. Phil Thompson, an urban planner and political scientist at the Massachusetts Institute of Technology in Cambridge, said he grew up “in a family and a network of churches very involved in the civil rights movement.” He said, “I find it strange when people ask why I care about healthcare.” He explains that in Brooklyn, where he lived for many years, life expectancy among black men is worse than in Bangladesh and equal to that of men in Iraq. When the 20th health center closed in Brooklyn, he was appalled, asking: “Is closing a hospital because it is losing money . . . right?”

For the healthcare movement to succeed, Thompson said change must first take place among the people trying to make the change. “The real knowledge leaders are the people who live in the community…but we can’t build a movement if everyone shrinks when a doctor walks in a room.” And change doesn’t come easy. He said while documentaries about the civil rights movement show protests and marches, what isn’t shown is the years of work that precede visible change. He said, “You have to withstand blows and have the courage and confidence to move forward.”

Footnotes

Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.

References

SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA1995;274:1591-8. doi:10.1001/jama.1995.03530200027032pmid:7474243.